Rheumatoid Arthritis Petition

A Personal Account of receiving RA Treatment

This account was sent to ra-petition.org.uk and it is reproduced here in the hope that it might better inform our visitors of the process of receiving treatment. If you would like to add your accounts please email info@ra-petition.org.uk

When my local Arthritis Clinic began its biological treatment in the Summer of 2002, patients were separated into those destined for the anti-TNF therapy and those who had to remain on conventional disease modifying drugs. To clarify "biological " in this context, the drugs used are derivatives of protein based treatments.

Firstly, patients had to undergo an assessment, in which the following were taken into consideration:

1) The general state of inflammation

  • measured by the doctors by feeling the joints
  • based on recent blood tests
  • patients pain assessment on a scale from 1 to 10 where the cut off point was five. Any pain factor above 5 could be taken into consideration.

2) the general state of health

  • patients had to have a blood test
  • patients had to have a lung x-ray
  • patients had to have a test for Tuberculosis - i.e. the absence of

3) if all tests proved satisfactorily, they were admitted to the treatment programme.

Those receiving ENBREL were shown how to inject themselves with the drug on a twice weekly dosage; similar to diabetics who also have to give themselves Insulin injections.

Those receiving INFLIXIMAB on the other hand undergo an infusion treatment. Patients also have to take at least one of their disease modifying drugs, mostly methotrexate. In my case I had to stay with Leflunomide though on a reduced dosage. Infliximab as an anti-inflammatory treatment was first used in Crohns Disease, and therefore has a proven tract record, but the treatment it not cheap. Around £12,000 per year per person. I understand that the cost of ENBREL has also gone up and is now around £10,000 a year per person.

The INFLIXIMAB infusion is prepared on the day of the patient's arrival, the powder form is measured out based on the patients weight. At first the patient will be given a saline solution, then the infusion solution and finally another saline solution to flush the Infliximab through. There are certain rules how fast the drip can run, and it is constantly monitored to adjust the flow.

A new patient will be given the infusion at shorter intervals than normal: with a two weekly interval after the first treatment, then a four week interval and finally an eight week interval. After that the interval remains at eight weeks.

During the session the patients blood pressure is continuously measured, and at least one doctor comes to listen to the patients' heart rate. Patients will also be asked questions and may or may not have their joints examined.

I have talked with people, who had RA for 20 years or more, who could only walk on two crutches and who are now walking normally and unaided. On a personal account, my RA started four years ago and did not respond well to any of the conventional treatments. It was deemed an aggressive form. After years of trauma when the drug treatments failed, I started in September 2002 on the infusion treatment and my RA has been in recession since last spring. I cannot thank my local Arthritis Clinic enough and also my local Health Authority for all they have done for me. I believe that while there is no cure for RA, everybody should have at least the chance to take part in the biological treatments. For that reason, it is necessary to collect more and more signatures to persuade those with the purse strings, that people with RA deserve a better quality of life and be able to live pain free lives.

Sign our Petition for ENBREL funding

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